On last night’s Late Debate programme on Radio One (which you can listen back to here), Minister Kathleen Lynch was asked to comment on the publication of the Assisted Decision-Making (Capacity) Bill (from about minute 52 onwards). This Bill has been placed in the A list of legislative proposals and the government has stated that is key to Ireland’s ratification of the UN Convention on the Rights of Persons with Disabilities (CRPD).
The Minister was keen to point out that the Bill should not be narrowly construed as only affecting people with intellectual disabilities, acquired brain injury and psycho-social disabilities – but rather that it is a broad piece of legislation that should impact on the way that we all make decisions and plan for the future – and will be especially relevant for older people. She emphasized that the Bill had changed significantly from the Scheme of the Mental Capacity Bill published in 2008 and credited a great deal of the change to the engagement with civil society – specifically mentioning Amnesty’s Mental Health Campaign and Gerard Quinn, Director of the Centre for Disability Law and Policy (CDLP).
In response to calls from other panelists, particularly Colm O’Gorman, Director of Amnesty Ireland, to urgently publish the legislation, the Minister referred back to the calls from civil society, including Amnesty and the CDLP to get this legislation right – rather than to publish something quickly that would not meet international human rights standards. However, it has been almost a year since Amnesty and the CDLP, along with many other organizations, published principles on how to frame human rights-compliant capacity legislation, and yet, the publication of this Bill seems not to have been prioritized on the legislative agenda.
Minister Lynch stated that this legislation would put the individual’s will and preference at the centre for the decision-making process, and that it had the potential to make Ireland world leaders in the implementation of the UN CRPD, specifically in relation to Article 12 on legal capacity. However, she also noted that there were difficulties in basing decisions on will and preference in certain circumstances.
“We want the guardianship piece in it…Will and preference… but then again we have a difficulty in relation to it, and it’s something we have to discuss. For instance in terms of will and preference and people that would have a psychotic episode and go into an acute unit. Does the will and preference still exist? Or will we put a guardianship piece in place that says your will and preference is now transferred to the person who is now your guardian?”
Colm O’Gorman was quick to point out that Ireland would certainly not become a leader in the field of legal capacity reform if we were to introduce an adult guardianship regime – an issue which was discussed at length in the Oireachtas Justice Committee in their hearings on the legislation over a year ago. Guardianship and other forms of substitute decision-making have repeatedly been criticized by the UN Committee on the Rights of Persons with Disabilities in their concluding observations on states parties to the UN Convention.
This interview highlights some of the key misunderstandings about legal capacity reform. There are, of course, ‘hard cases’ where it may be difficult to know what the person’s will and preferences are – or where to follow the person’s express wishes might put them in significant danger. For example, a person may object to or refuse an intervention which could be life saving when she is in the middle of a mental health crisis. But if we are to take ‘will and preferences’ seriously that doesn’t mean that the law should only respect the wishes of those that correspond with their doctors, or their family members, or other professionals who work with them.
The new support model of legal capacity introduced in Article 12 of the CRPD does not, I believe, require one to support an individual, and uphold their wishes where to do so would amount to civil, or criminal negligence. Genuine emergency situations, where a person’s life is in danger, do exist, and interventions which attempt to preserve life, and ultimately to restore and augment the individual’s legal capacity, should be provided for in legislation. However, these interventions should never amount to a removal of the individual’s legal capacity, and should not be used simply where the person refuses a course of action (such as medical treatment) against medical advice. We must, however be extremely careful to ensure that the exception does not become the norm – otherwise, the progress achieved in the ‘support’ provisions of the new legislation will become redundant.
I would urge the drafters of the new legislation, when they consider how to deal with the ‘hard cases’ which the support model of legal capacity presents us with, to talk to those who work with and know individuals who are daily confronted with challenges in having their decisions recognized and validated. The National Advocacy Service has supported individuals in a variety of such situations, including those in a ‘minimally conscious state’ – and worked hard to discover what that person’s will and preferences might be, and how to respect them. A number of Genio-funded initiatives have worked with people who have significant, and complex disabilities – and demonstrate that even where someone is not communicating in ways that others can easily understand, there are ways (including circles of support) to discover their will and preferences.
I believe that we must break the link between mental capacity and legal capacity in the new legislation – and stop assuming that because a person has a diagnosis or label of disability (including a mental health condition) – that they have less decision-making ability. We all have different levels of decision-making ability, based on a multiplicity of factors (our environment, how tired we are, how easy to understand the information about the decision is) – but for most of us, our decision-making is never legally questioned, even where it is irrational, or unwise. We need to ensure that discriminatory barriers (and I believe that assessments of mental capacity, even where these purport to be objective, constitute such barriers, especially as those of us without a diagnosis of disability are rarely asked to undergo such assessments) are not carried forward into the new legislation which Ireland views as the key to ratifying the Convention on the Rights of Persons with Disabilities.